Rare digestive disease may not be so rare

Medicine & Science

February 17, 2003|By Jonathan Bor | Jonathan Bor,SUN STAFF

Celiac disease, a digestive disorder that can cause children to starve no matter how much they eat, is much more common than previously thought, according to a study by researchers at the University of Maryland Medical Center.

Despite the perception that the disorder is rare, Dr. Alessio Fasano found celiac disease in 1 out of 133 people who did not have obvious symptoms or risk factors. This means celiac disease may afflict more than 1.5 million Americans, making it more common than Crohn's disease, ulcerative colitis and cystic fibrosis combined.

The classic case of celiac disease is a short, scrawny child with chronic diarrhea, a bloated abdomen and weakness.

But Fasano, a pediatrician, said thousands of children and adults with less clear symptoms go from doctor to doctor in search of answers, all the while suffering painfully from a sometimes fatal disease.

"Sometimes, they are told that everything is in their mind," Fasano said. "The level of frustration is incredible."

Celiac is an autoimmune disorder in which the body's defenses attack the intestines, damaging the ability to absorb nutrition from food.

The disorder is triggered by genes and the ingestion of gluten, a gluey substance found in practically all grains except rice. Patients can remain healthy by eating a gluten-free diet.

What makes the diagnosis elusive, Fasano says, is that symptoms can show up early or late in life, can be mild or severe, and can include anemia, osteoporosis, constipation, chronic fatigue, short-term memory loss and mood swings.

It took two years for Andrea Levario to find out what ailed her son, Pablo Douros, who at 3 years old developed constipation and a distended stomach. Doctors said nothing was seriously wrong when they found no evidence of parasites, hepatitis or cystic fibrosis - three leading candidates.

While trolling the Internet for answers, Levario discovered accounts of similar symptoms experienced by celiac disease patients. She urged her son's doctors to test for the disorder, and its presence was confirmed.

"Pablo had gained no weight in over a year, and the pediatrician didn't notice," said Levario, who lives in Alexandria, Va. "Since May of 2001, he's gained 12 pounds."

Marjean Irwin, 67, had been healthy for years when she developed diarrhea and abdominal pains last year and "coded" in a Pittsburgh hospital when her blood pressure plummeted.

Surgeons repaired a tear in the tissue that holds the intestines in place, but they sent the Catonsville woman home without a diagnosis. She suspected that she had celiac disease while reading a popular medical reference, and a blood test and a biopsy soon proved her right.

Dr. Stephen James, deputy director of the division of digestive diseases and nutrition at the National Institute of Diabetes and Digestive and Kidney Diseases, said the University of Maryland research is flawed because it did not work with a broad, representative sample of the U.S. population.

The researchers screened 9,019 patients who either had symptoms or a family history of celiac, and 4,126 others considered not to be at risk. The second group included blood donors, school children and patients who were getting routine checkups at clinics.

James said the 1-in-133 ratio may be inflated, but he said the basic point is most likely correct: "Celiac disease is under-recognized in the United States."

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